Saturday, 23 March 2013

My story-part 3

Yesterday, I left you all at the point when I was diagnosed
with Friedreich’s Ataxia. You might say that I seem to rush through the next
decade of my life but it reflects how things have been. One minute, I was
walking around (wanting to become a professional footballer) and the next, I’m
in a wheelchair permanently.

From the moment I found out, I was sent for yearly heart
appointments at G.O.S.H. and yearly x-rays on my spine at Stanmore. My
condition gradually got worse from then on and I was soon using a wheel chair
part-time. At twelve I was given an electric wheelchair by ‘Whizz Kids’, but
still didn’t need to use it all the time. By the time I was fourteen it became
impossible for me to use the stairs so our garage was converted into a bedroom.
I had to use the electric wheelchair more frequently.

After finishing my GCSE exams at sixteen, I finally had to
have an operation to fix my scoliosis. After the major operation, which
hospitalised me for over a month due to minor complications, I could not walk
so I was permanently using my wheelchair. It took a long time for me to be able
to weight-bear in order to do transfers. By the time I could, the Doctors
discovered the rod in my spine had snapped and as I was in severe pain I needed
another operation.

Two years after my initial operation I finished my A levels
and then was operated on for a second time. The procedure was successful and
they put a second rod into the bottom of my spine to give it stability.
However, there was another crack in the top of the rod, which was noticed after
the operation, and they are keeping an eye on it.

This is my story up till now and it has taken a long time to
accept that I am in a wheelchair and my body is always changing. My condition
continues to get worse and the latest problem seems to be my hearing.

Now I have got my head round it so to speak, I want others
to understand what it means to be disabled and that is why I blog. The Big Blog
Exchange would give me the unique opportunity to open other’s eyes. However, this
dream will definitely not become a reality if the pace of voting continues.
Let’s get the votes coming in thick and fast again: http://www.bigblogexchange.org/blog/72005

2 comments:

Oh my! I feel sorry for your condition. I do hope there's a way to make your condition better. I heard that disease can be treated by surgical interventions. Plus, physical therapists will prescribe you with an exercise program that will help you in your condition. Also, make sure that you file an social security disability insurance to get your benefits.- Erminia Cavins